Cystic Fibrosis Tasmania Inc

Cystic Fibrosis Tasmania Inc is a nonprofit organisation dedicated to supporting individuals living with cystic fibrosis (CF) in Tasmania, Australia, as well as their families and carers. The organisation provides resources, advocacy, and assistance aimed at improving the quality of life and health outcomes of people affected by this life-shortening genetic condition.

Background

Cystic fibrosis is an inherited autosomal recessive disease that primarily impacts the lungs and digestive system due to the production of thick, sticky mucus. Advances in medical research and treatment have significantly improved life expectancy and disease management from decades ago when infants with CF rarely survived beyond infancy. CF is caused by mutations in the CFTR gene, which encodes a protein essential for regulating salt and water movement in cells.

Mission and Services

Cystic Fibrosis Tasmania Inc focuses on supporting Tasmanians with CF through:

• Providing information and education about cystic fibrosis to individuals, families, and the broader community.
• Offering advocacy to ensure the needs of people with CF are recognized by health services and government.
• Supporting access to appropriate healthcare and therapies tailored to CF management.
• Connecting those affected by CF to local networks and peer support groups.

The organisation plays an important role in helping people live longer, healthier lives by addressing both the medical and social challenges associated with cystic fibrosis in Tasmania[1][2][3].

Community and Symbolism

The organisation embraces the term "65 Roses" as a way to promote awareness and understanding of cystic fibrosis. This term originated in 1965 when a young boy misheard his mother talking about CF and interpreted it as "65 Roses," which has since become a symbol linked to the condition and its community[1].

Governance and Registration

Cystic Fibrosis Tasmania Inc operates as a registered charity under Australian law with the ABN 91650624407RR0001. It collaborates with national bodies, such as Cystic Fibrosis Australia, to align with broader advocacy, research, and support initiatives[2][5].

By providing vital support and resources tailored to the Tasmanian CF community, Cystic Fibrosis Tasmania Inc contributes significantly to improving awareness, care standards, and quality of life for people affected by cystic fibrosis within the region.

[1] https://cftas.org.au [2] https://www.acnc.gov.au/charity/charities/3d366cad-38af-e811-a95e-000d3ad24c60 [3] https://www.acnc.gov.au/charity/charities/3d366cad-38af-e811-a95e-000d3ad24c60/documents/c8284a68-2de6-ec11-bb3d-002248944339 [4] https://cftas.org.au/wp-content/uploads/2023/05/2022-Annual-Report-Final-Paula-Wriedt.pdf [5] https://www.cysticfibrosis.org.au